When something is just not right

Sometimes it takes a while, especially for first-time parents, to realise that something is not right with their child. Often, they do have a gut feeling, but the denial mechanisms that protect us from seeing things we can’t really deal with are extremely strong.

The little boy had lovely curls. I first met him at our house, but my professional eyes cannot be turned off, just because we are having a barbecue party…

At a bit over three, he used single- or two-word sentences, and even those utterances were difficult to understand – not good. He was in constant motion, wandering around the house, and was challenging to occupy with a single activity for more than a very short period of time.

He had difficulty accepting rules, such as not touching my son’s Lego castle, which he ultimately broke into the hundreds of pieces it was carefully crafted from. Ever since, my son screams “oh, no!” every time we mention the little boy’s name.

When the little boy was not happy with something, he lay down on the floor and screamed. As did the little girl on the beach where we were yesterday. I really had to keep myself from staring at that poor mother with her child; the screaming was of a high-pitch, annoying tone and it kept on and on until the child got what she wanted or was forced otherwise. Such as putting on sunscreen. Which made her wail for several minutes, long after the mother was done.

The reason I tried so hard not to look is because of the interview study we had done with parents of children with autism. In their stories, parents told us the countless occasions on which they were stared at in public because of their children’s “meltdowns”.

In Hungary, where public knowledge about developmental disorders is limited, but people’s self-perceived right to interfere with other peoples’ lives isn’t, parents were told innumerable times what ill-disciplined children they had. Even within the family, in-laws or sisters instructed mothers that it was only a matter of proper discipline, and the child would start to behave.

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Of course, by the time of these public meltdowns, parents knew something was wrong. It was all those early signs they could not put together into the notion of some kind of developmental delay.

We also had examples of parents who did know. One of the interviewed mothers in our study said:

We started pushing that we ought to start doing something about the child because he is still not speaking, not a word. (…) Both of them (GP and district nurse) just brushed me off. ‘Boys are slower to think, slower to talk, don’t worry, once he starts talking you’ll have more then enough, it will even give you a headache.’ They tried to reassure me. But I did not settle for that. I took him and checked up on things.

So this mother listened to her intuition. She even got lucky and found adequate services. However, the problem with early childhood services is that they are patchy.

Even in countries, such as Sweden and Australia, with well-established child health surveillance systems and high coverage, kids get lost. It’s not that they don’t attend services. It’s that services do not talk to each other, do not coordinate their efforts, so parents have to.

A solution to this is the so-called ESSENCE approach, developed by Professor Christopher Gillberg. It is to consider Early Symptomatic Syndromes Eliciting Neurodevelopmental Clinical Examinations as an entity, needing attention. What diagnosis the child will eventually receive is less important. What counts are the child’s and family’s needs here and now.

In the end of August we will visit the only ESSENCE-clinic in Sweden. I thought we could make our own one in Uppsala. A place where parents and clinicians, who feel that something is just not right with a child, could get a proper evaluation and advice. Here and now, before the humiliation of public meltdowns becomes their everyday life.

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